I'm Angry!!!

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Jan 15, 2003.

  1. dhcpolwnk

    dhcpolwnk New Member

    I saw my neurologist this morning and tried to give him a copy of Devin Starlanyl's information sheet on fibromyalgia for neurologists. His response was, "We don't deal with that here." And he handed it back to me!

    His office hadn't been very helpful in the past when I asked for an e-mail address to send the material to him; so today I brought in a printout. I also gave him a copy of the article about traumatic brain injury and fibromyalgia, pointing out that although I don't have traumatic brain injury, I *do* have brain damage associated with my MS, and the article may raise some worthwhile points. At least he accepted that one with seeming interest. I had to explain to him that I didn't expect him to take primary responsibility in treating my fibro. I just wanted him to be aware of it and its implications for my neurological problems and treatments. He finally agreed to take the Starlanyl piece and look it over, but I suspect he'll just toss it.

    This was a heckuva day. After seeing my neuro, I went to the endodontist for a root canal job. (Fortunately, she *was* interested in the Starlanyl info for dentists. I had e-mailed her a couple of pieces, and the first thing she said when we went into the office was that she had received the files. She actually thanked me and said she had the book as well. I could definitely tell. She was very gentle and gave me lots of mini-breaks to rest my body and my jaw. She provided a buckwheat pillow to support my neck and shoulders while she was working, too.

    Unfortunately, after working on me for almost two hours, she found a crack in the tooth that was bad enough to require oral surgery to extract the tooth. She immediately called my dentist, and the two of them gave me a referral to an oral surgeon in the same building as the endodontist. She even got me an emergency consult right away. I could have had the extraction done right away under local anasthetic (I was still numb from the endodontal work), but I had some muscle spasms when I first got the anastethic today (which the endodontist also was very careful to work with me on). Between the potential for fibro pain, the myoclonic jerks I'd had earlier and being just plain tired, I decided to have the procedure under a general anasthetic. (Well, I guess it's not a full general. I understand it puts you into sort of a twilight sleep.) That's now scheduled for Jan. 23. Then, after four to six weeks, I get more dental work--either an implant or a bridge to replace the extracted tooth. The oral surgeon, like the endodontist, was interested in reading about the fibro aspects of dental work.

    I wish I could go to another neuro, but my doctor is the head of the department, and I got this attitude from my previous Kaiser neurologist, too. It's as if they're not treating a person. They're treating a disease, and if your problem isn't related to that disease, they don't want to hear about it.

    I did learn one thing. My elevated liver enzymes *might* be the result on the Avonex I'm taking for MS instead of the Tylenol I've been taking for pain. Unfortunately, if that's the case, it means I have to start from Square 1 with a new MS medication--or go off the medication completely and just pray the MS doesn't eat away at my brain too much. I guess the silver lining is that would mean I still could take Tylenol for pain instead of needing aspirin or other NSAIDs, which aggravate my GERD.

    On a positive note, so far I'm not in much pain (if any) from the endodontal work she did today. I'm just trying to figure out how to cope with the pain in my right shoulder, upper arm, elbow, wrist and thumb. My primary care doctor diagnosed rotator-cuff tendinitis (bursitis), but I really don't think that's what's wrong. I looked at the first edition of Devin Starlanyl's book, and it appears that my pain is in a trigger-point referral area, but I don't have the ropy bands that characterize CMP trigger points.

    May Heaven save us all from self-important doctors who think they have nothing to learn from their patients!

    --Laura R.M.
  2. coyote

    coyote New Member

    I couldn't agree more.
  3. Fibromiester

    Fibromiester New Member

    I could almost feel your pain and frustration in that post! So Sorry for your experience! I will sure pray your visits in the future go a whole lot better! You keep educating yourself (and them!), and take good care of yourself! Fibromiester
  4. marcus1243

    marcus1243 New Member

    Sorry that you're having to go through this with your neuro. I had a similar experience with a neuro I saw who told me that fibro and ME didn't exist, that he was 'convinced' I didn't have MS (this without ANY tests) and that I should see a psychiatrist and stop wasting doctors' time. For some reason, neurologists are more arrogant, callous and lacking in social skills than nearly all other branches of medicine. In addition, I have to say that Starlanyl's book is generally *not* respected by the medical profession (a layperson writing a specialist medical guide -- outrageous!!), so a neurologist is the last person I would try and show it to, sadly.
    I wonder when it comes to your neuro, whether you might not be better off relating your symptoms and treating those as he thinks fit. At least if his therapies don't work (muscle relaxants, analgesics etc), he'll be forced to reconsider of his own volition. These people really need to feel that they're calling the shots. Sad, but true. Either that or see a rheumatologist, and attack it from that angle..?
    Btw, I'm seeing an MS specialist today -- one of the top docs in the country -- so I hope he's a little more accomodating in listening to me before passing judgement!
    Hoping you improve soon,
    --marcus
  5. dhcpolwnk

    dhcpolwnk New Member

    Good luck with the MS specialist you're seeing. I had some bad experiences with my first neurologist, but then I was spoiled by the MS doctor I had for several years when we had traditional health insurance. He's not only an MS specialist but also a caring doctor--and a real human being! I used to go in for a checkup without anything in particular on my mind, and he always seemed to ask the right questions to find where the MS was limiting my life or causing problems that I had just accepted without questioning. Then he would offer me something to help resolve the problems and/or improve my quality of life. He's really something special. I will qualify for Medicare this spring, and I'm considering dropping Kaiser so that I can go back to this neurologist. The problem is that I also would have to give up prescription drug coverage through Kaiser.

    Regarding attitudes toward the Starlanyl book, it's interesting that she would be regarded as a lay person. She is an M.D., and Kaiser sells her book through it's health education department. To me, that means Kaiser recognizes the information as medically sound. However, you may be right as far as most neurologists' attitudes are concerned. They may consider non-neurologists "laypersons" even if they are doctors!

    --Laura R.M.
  6. dhcpolwnk

    dhcpolwnk New Member

    Hi, Sunny. I wasn't aware of the report about Tylenol and other over-the-counter meds increasing pain sensitivity, but I sure am interested! Do you have an article or other reference you can give me? If it involves a web site that you can't refer to on this board, please send it to me by direct e-mail. My e-mail address is af752@lafn.org. Thanks.

    --Laura R.M.
  7. marcus1243

    marcus1243 New Member

    and he told me there is "no chance whatsoever" that I have MS. This guy is one of the eminent UK MS specialists, and also a neuro-opthalmologist. Amazingly, he is a warm, friendly, approachable and candid guy. And more importantly, he's the 3rd neuro to say I definitely don't have MS. I *have* to now go with this, and stop chasing the MS idea.
    Interestingly, he's not sold on the Fibro idea either, and we're going to look into the idea that I have another auto-immune or inflammatory disorder going on (he's thinking specifically polymyositis).
    Just wanted to say that not all neuros are jerks -- this one is a gem.
    best wishes,
    --marcus
  8. dhcpolwnk

    dhcpolwnk New Member

    Hi, Marcus. I'm glad you found a good doctor, though it's frustrating to not know what's wrong with you. I have a good friend who thought for years that she had MS. In fact, we met in a supervision group for MS peer counselors. Turns out, she had a different neurological problem and never had MS at all. When she found that out, it was a hard adjustment. Now she's having fibro-like problems but apparently doesn't have fibro (not enough tender points). She's been checked for a couple of other things, but those diagnoses haven't panned out, either. It's very frustrating.

    But it sounds as if your new doctor is willing to help you solve the puzzle. That's really great. It's good to know there still are a few like that around!

    --Laura R.M.